Just a few weeks ago, Cystic Fibrosis was something we had heard of, but knew little about. In a very short time, that all changed.
We never would have dreamed that at one week old we would get a call from our amazing pediatrician trying to gently break the news to us. She asked if we could get on the call together, which is seldom a good sign. We will never forget her saying to us, "I am so sorry to tell you this over the phone." Our world stopped while waiting for what was to come next. Our brand new baby had tested positive for Cystic Fibrosis on his neonatal profile testing.
There are no words that can explain the amount of anguish that came with hearing those words. She explained everything she possibly could to us over the phone, faxed us paperwork, and had us at the UK Pediatric CF Clinic within a few days. The days leading up to that appointment were scary, stressful, and very humbling. Some of the many questions rushing through our minds were how, why, where do we start, how do we make sure he gets the best care possible, and what will his life look like from here? And then, what about Claire? Yes. She would also need to undergo testing.
From that first appointment on we have been overwhelmed by the support of the UK Clinic and the CF Foundation. They have been there from day one to get his enzymes, vitamins and formula expenses paid to help cover any financial burden. They have connected us with helpful and up to date treatment options, linked us with other parents of CF patients, and they regularly reach out to see what we need. It has been amazing to have the support, understanding, and knowledge from people in our exact same situation.
This is just the start for our family, but because of this foundation, we are able to see a bright future for our sweet Jameson.
What Jameson, and so many others need, is advancements in medical research. That is where you can help. Your support can help find a cure for Cystic Fibrosis.
Please help and donate to the Cystic Fibrosis Foundation by joining our “Team Mountain Climbers” for a virtual walk. This little man will climb mountains and we have no doubts about that!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.